King’s Research Portal DOI: 10.1111/camh.12271 Document Version Peer reviewed version Link to publication record in King's Research Portal Citation for published version (APA): Godfrey, E., Aubrey, M., Crockford, S., Haythorne, D., Kordowicz, M., & Ashworth, M. (2019). The development and testing of PSYCHLOPS Kids: A new child-centred outcome measure. Child and Adolescent Mental Health, 24(1), 54-65. https://doi.org/10.1111/camh.12271 Citing this paper Please note that where the full-text provided on King's Research Portal is the Author Accepted Manuscript or Post-Print version this may differ from the final Published version. If citing, it is advised that you check and use the publisher's definitive version for pagination, volume/issue, and date of publication details. And where the final published version is provided on the Research Portal, if citing you are again advised to check the publisher's website for any subsequent corrections. 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Sep. 2021 The development and testing of PSYCHLOPS KIDS: a new child-centred outcome measure Emma Godfrey,1 Molly Aubrey,1 Susan Crockford,2 Deborah Haythorne,2 Maria Kordowicz,3 Mark Ashworth.3 Author affiliations: 1. Departments of Psychology & Physiotherapy, King’s College London 2. Roundabout Dramatherapy (Registered Charity 297491) 3. School of Population Health and Environmental Sciences, King’s College London 1 Abstract Background: There are currently no client generated measures able to capture a child’s perspective of the value of generic therapeutic mental health interventions. We have developed a new measure called ‘PSYCHLOPS Kids’. It measures areas of individual importance to the respondent and contains both quantitative and qualitative elements. We aimed to pilot this new outcome measure and determine its psychometric properties. Methods: PSYCHLOPS Kids was adapted from the adult PSYCHLOPS questionnaire, a validated and reliable client-generated measure used in primary care mental health. Development of PSYCHLOPS Kids involved an expert group, pilot testing with dramatherapists followed by psychometric testing with children receiving dramatherapy aged 7-13 years. Results: 132 children completed pre- and post-intervention questionnaires. Mean initial PSYCHLOPS Kids scores (scale of 0-12) were 4.98 (SD 3.42); mean post-therapy, 3.24 (SD 3.03); mean effect size of change, 0.51. The Strengths and Difficulties Questionnaire (SDQ) was used as a comparator instrument completed by parent/carers of 32 children; mean effect size, 0.39. The effect size difference between both instruments was not significant (t = 1.05; P = 0.30); the PSYCHLOPS Kids Problem domain effect size (mean, 0.68) was significantly greater than for the SDQ (t = 2.06; P = 0.04). Concurrent validity was demonstrated by strong predictive power of change scores for the self-assessment of change item in PSYCHLOPS Kids; 2 therapist-assessment of change was not a significant predictor of change scores. PSYCHLOPS Kids and SDQ change scores were not significantly correlated. Conclusions: PSYCHLOPS Kids is the first client generated mental health outcome measure focussing on problems for generic use in children. It has demonstrated moderate responsiveness to change and satisfactory testing for measured aspects of validity and reliability. PSYCHLOPS Kids now requires further validity, reliability and qualitative testing. 3 Key Practitioner Message: • There are currently no client-generated, problem based mental outcome measures available for use with children • Client generated outcome measures only measure items defined by children themselves • In contrast, most outcome measures used with children are standardised, capturing responses to a series of pre-determined questions • We have developed a client-generated, problem-based measure called ‘PSYCHLOPS Kids’, based on a previously validated adult measure, ‘PSYCHLOPS’. • We describe eight stages of piloting followed by validation testing. • PSYCHLOPS Kids demonstrated higher responsiveness to change when compared with a standardised measure. • Validity and reliability testing were satisfactory. Introduction There is a lack of robust client-centred psychological evaluation in therapeutic work with children. Most outcome measures used with children are standardised measures which capture the child’s or parent/carer’s response to a series of pre- determined questions (Goodman, 2001; Gowers et al., 1999). We wanted to shift the focus to obtain the more client-centred perspective on outcomes provided by a client generated measure. Client generated measures score items defined by clients themselves, either in terms of problems or recovery goals (Higginson & Carr, 2001). Client generated outcome instruments for use with children have been developed for specific therapeutic situations such as autism (Kirk & Dutton, 2006). Assessment of therapy-based goals has been pioneered through use of the Global Assessment Scale (GAS) in a variety of paediatric settings (King et al., 2009). However, there are 4 currently no generic, client generated, problem based measures available for use with children. We planned to develop a client generated, self-complete measure for use with children. We therefore decided to adapt one of the most commonly used adult client generated measures, PSYCHLOPS (Psychological Outcome Profiles) (Ashworth et al., 2004). It has been validated for use in adult mental health interventions in primary care, community and secondary care mental health settings (Ashworth et al., 2004; Hedinsson et al., 2013; Kelly, 2010). PSYCHLOPS is included in the list of mental health outcome measures approved by the UK Department of Health (National Institute of Mental Health in England, 2008). More recently, PSYCHLOPS has been used in World Health Organisation (WHO) trials to evaluate mental health interventions provided by trained lay health workers in conflict zones in developing countries (Rahman et al., 2016). Unlike standardised measures, a client generated instrument contains qualitative data; scoring of qualitative data provides quantitative data outputs with the main focus being on individual change scores. Comparison of client generated baseline scores is not standardised against population norms (since each client is scoring individualised items); change scores represent the change in individualised items rather than standardised items (Lacasse et al., 1999). The aim of developing a new measure was to remain aligned to the original concept of PSYCHLOPS by including both the child’s perspective (recorded as qualitative data) while measuring outcome scores (quantitative data). 5 Adult PSYCHLOPS is a brief, self-administered questionnaire designed to capture the client’s own perspective of their psychological distress (Ashworth et al., 2005). It asks clients to describe and score the problem that troubles them the most at the start of therapy, then to describe and score any limitations (functional impairment) arising as a consequence of these problems. Scores are elicited using Likert scales; responses are collected on a rating scale with six anchors ranging from "0 - Not at all affected" to "5 – severely affected". Clients score these same items at intervals throughout the process of therapy, and at completion. If new problems arise during the course of therapy, these too are described and scored. Client generated measures are characteristically more sensitive to change than conventional, check-list type questionnaires because they tap into issues of importance to the client, rather than merely offering a series of items, many of which may lack meaning or relevance to the individual (Lacasse et al., 1999; Ashworth et al., 2004; Elliott et al., 2016). Adult PSYCHLOPS was designed by a group of mental health practitioners and general practitioners (Ashworth et al, 2004), with user involvement from Depression Alliance, a UK charity for people affected by depression. Drafting involved consultation with the Plain English Campaign and finally the Crystal Mark award based on readability. Therapist feedback following use of this measure has been positive (Ashworth et al 2005) and contributed to subsequent versions of PSYCHLOPS. Creating reliable and valid assessments is increasingly important and has been neglected in terms of client generated measures for children and young people. It 6 was essential to involve key stakeholders in this process, as this had proved successful when developing adult PSYCHLOPS. Our aim was to create a new version of PSYCHLOPS which could be used with children and then to pilot the questionnaire in a therapeutic setting. Methods Setting for development and piloting of PSYCHLOPS Kids We collaborated with Roundabout, a UK charity which